[Diagnosis] Questions about OSCAR data/SpO2/heart rate/flow limitations

[Geer1]

So about a 3-4% lower SP02 during sleep. That is roughly what I expected and supports that there is a drop due to sleep state even though apnea is not present.

I'm in the same state as you right now with doctors. Currently on my 12th day of waiting for someone to review imaging and give me a decision on if I can remove a cervical collar (fractured my neck back in Nov). Haven't even heard if a review or appointment is imminent...

[phlamingo]

Good day, all.

Well, since I last posted, I had an appointment with a medical provider who said I definitely have the symptoms of ME/CFS, except that it needs to have been six months of life-altering fatigue (I'm now at almost three months) and that a battery of blood tests need to be run to rule out other diagnosis. So I took a break for a while to just stew in that knowledge. And I got my heart monitor data, but no interpretation of those results. I see my new PCP next week and cardiologist the week after. Bought a CM250F oximeter, which is working out really well. 

Also, I started taking Trazadone before bed again. I've been taking it for more than a year to help me fall asleep. When I started seeing a new psychiatrist last year, he was interested in my stopping it. I started taking it less often in December and hadn't had any since the 31st. Since then my sleep had been getting more broken up and unstable: my charts were all over the place, more wakeups for the bathroom or for just being uncomfortable, even purposefully slept without the mask for a couple hours because it was bugging me. If I woke up, I often couldn't go back to sleep right away. Tried a couple nights of melatonin, but still couldn't sleep as well. So, after two nights of taking Trazadone again, I'm back in the deeper sleep that I first enjoyed after getting my CPAP!

           

[Geer1]

I have done a fair bit of research on ME/CFS wondering if it was related to my fatigue.

It is a diagnostic nightmare. Like you say it is a diagnosis by elimination and it isn't really a disease etc just a group of symptoms with unknown cause. I think a lot of doctors use it as a scapegoat to explain cases they aren't familiar with although I do think there is a state (I call it a state rather than a disease) where your body gets stuck in a chronic fatigue loop it is unable to get out of on its own.

In my research on the matter I have found little helpful information on treatment other than some stories of improvement after treating digestive issues. After having some improvement myself doing this and seeing enough comments about others with more obvious CFS say it helped them I think it is part of the picture. I don't know that the digestive treatments and diet changes make the underlying issues go away per say but I think they can make it much easier to deal with.

Not sure if you feel like you have digestive issues but if you do my recommendation is definitely to start digging and trying to improve them. In my personal experience it can make a huge difference on health in general (not just digestion).

[phlamingo]

I have done a fair bit of research on ME/CFS wondering if it was related to my fatigue.

It is a diagnostic nightmare. Like you say it is a diagnosis by elimination and it isn't really a disease etc just a group of symptoms with unknown cause. I think a lot of doctors use it as a scapegoat to explain cases they aren't familiar with although I do think there is a state (I call it a state rather than a disease) where your body gets stuck in a chronic fatigue loop it is unable to get out of on its own.

In my research on the matter I have found little helpful information on treatment other than some stories of improvement after treating digestive issues. After having some improvement myself doing this and seeing enough comments about others with more obvious CFS say it helped them I think it is part of the picture. I don't know that the digestive treatments and diet changes make the underlying issues go away per say but I think they can make it much easier to deal with.

Not sure if you feel like you have digestive issues but if you do my recommendation is definitely to start digging and trying to improve them. In my personal experience it can make a huge difference on health in general (not just digestion).

Good advice! I've made some changes already (and dropped six pounds since mid-December!). I stopped drinking milk because I was getting bloated each time. Other dairy (don't take my cheese from me!) seems to not cause the same issue. Sugar has been cut back drastically. I know I need to eat more fruits and veggies, but I'm a horribly picky eater and get grossed-out easily.   I have a referral to a nutritionist, so hope to glean from knowledge from them.

[Geer1]

As far as dairy goes there are two main types of intolerance. The most common is lactose intolerance which everyone has to some level since lactose on its own cannot be absorbed by our bodies. In order to digest lactose an enzyme (lactase) must break down the lactose into simpler components that can be digested. If you consume too much lactose and don't have enough enzymes to break it down then the remaining lactose passes into large intestine where it is digested by bacteria and the bacteria release gas when doing so which causes bloating. If you only have a lactose tolerance the nice thing is that there are a number of lactose free dairy options available and some dairy products are naturally low in lactose such as aged cheeses in which the lactose is broken down by bacteria during the aging process and also butter.

The other intolerance is to the protein (most commonly casein A1), which is what I have. I don't know the method of action but it can cause similar issues (bloating was a big issue of mine) and unfortunately means most dairy is off limits. I used to love cheese, ice cream and cheesecake but once I realized they were causing symptoms it was easy to drop them.

As a test you could try sticking to lactose free products and see if that avoids your issues (say if you can drink lactose free milk without issue). If you still get some symptoms it would be worth trying an elimination diet of dairy. Elimination diets are the only way to effectively diagnose if a food is a bothering you and they consist of avoiding the food for up to 8 weeks (or resolved symptoms) and then slow reintroduction to see if symptoms come back.

Having researched this stuff a fair bit here are a few things to know and that you can discuss with nutritionist.

Food sensitivities do exist and I believe they affect a lot of people that don't even realize it (I think they are a common cause of digestive issues that people think they are just supposed to live with such as IBS, bloating, constipation, reflux etc). Some of them can be quite tough to diagnose, for example some of my main symptoms from dairy occur ~2 days after ingestion so back when I ingested it every day it was never obvious that it was causing the symptoms. It wasn't until I did elimination diets that I was able to realize a reduction in symptoms and then eventually I pinpointed it to dairy with multiple trials of elimination and reintroduction. 

A number of sensitivities like lactose intolerance are caused by complex sugars that your body can only break down in limited quantities on its own and if you eat too much of these items then you can get symptoms from bacteria breaking them down. Lactose is the most common, fructose is another one and there are others. There is actually a diet you can try called low FODMAP diet which decreases intake of such "fermentable" carbohydrates to see if it helps. An even stricter diet is called the specific carbohydrate diet. These two diets also can be used to help diagnose/treat something called SIBO which is when bacteria move into your small intestine and cause symptoms by breaking down food before your body can do so on its own (since small intestine is where the enzymes etc go to work to break food down).

Other common sensitivities are to the most common food allergens. Wheat, dairy, soy, nuts etc. Elimination diets of these foods can help pinpoint if any are an issue. These sensitivities can cause all sorts of issues and also exaggerate other ones. They keep getting more and more information about how removing some/all of these foods can relieve symptoms of things even like autoimmune diseases. I am sure you have heard of the paleo diet and probably people that have felt better once going on it, a big reason for that is that the paleo diet removes most of these common allergens. There are multiple forms and the strictest version is called autoimmune paleo diet which is a type of elimination and reintroduction diet itself. Although some people may have to remove a bunch of these foods usually you can pinpoint troublesome foods by doing elimination diets one at a time (or as you feel can combine them). For example eliminate wheat/gluten as one trial, dairy as another, soy as another or in combo with nuts etc.

As for some other nutritional basics carbs and sugars are the main issue for people with weight gain/issues due to diet (many people think fat is bad but it doesn't cause significant weight gain like carbs and sugar do). They are also believed to cause numerous health issues (type 2 diabetes the most obvious one) because our bodies aren't meant to eat as much sugar/carbs as the average north american does. Pull out a bag of sugar and measure out just shy of a quarter cup of sugar and ask yourself if you think that is a lot of sugar (I think it is). Did you know that there is ~ 0.21 cups of sugar in a can of pop and that most juices are high sugar content as well? Atkins diet used to be very popular and now keto is very popular, both are low carb/sugar diets. Lots of people feel good on keto and it is possible to lose a lot of weight on it (but many gain the weight right back) but it is a questionable diet and I personally think reducing carbs to a point where you can maintain the diet long term is better than short term ketosis and then losing motivation to stay on strict low carb diet. Imo one of the biggest issues with American diet is breakfast which usually consists of high amounts of sugar and carbs in the form of cereal, toast with jam, pancakes etc. I think asian cultures which eat similar food for breakfast as they do for lunch and dinner are much better in that regard. 

Fruits are a grey area and although a lot of people consider them healthy they actually are high in sugar and should be eaten in moderation, one trick I use is to mix fruit juice half and half with water so at least it has flavor but not as much sugar.

Proteins and vegetables are probably the most important foods that should make up the bulk of diet. Like you I struggle to get enough vegetable intake but I do know it is what a person should be trying to fill up on more so than carbs (carbs are unfortunately cheaper, filling and can be more tasty though). One thing I have started doing is trying to incorporate veggies into breakfast and one of my common breakfasts now is sausage with green beans and mushrooms. Another one I do is bacon, eggs and fried spinach and fresh tomatoes. 

The biggest thing I have noticed through transforming my diet is that I don't get food cravings like I used to. Carbs and sugars are crazy addictive and now that I have reduced them to a low but maintainable level I usually only eat two meals (a late breakfast/brunch and supper) and being late or missing a meal doesn't affect me like it used to. I have only somewhat tried intermittent fasting and might play around with it more (lots of people swear by it).

[phlamingo]

Thanks, Geer1!

[phlamingo]

Three days until my doctor appointment! Referrals! Blood tests! Oxygen (I hope)!

Meanwhile, I had a particularly interesting oxygen drop last night. What the heck is up with my breathing!?!? I've been video recording myself at night, so I can say with certainty that I was sleeping on my left side, my arms were out of the way (if my top arm is on my chest it can be constricting), and I DIDN'T MOVE before, during, or after the 15 minute period when I below 88%. I understand that I'm a shallow breather and may have obesity hypoventilation syndrome (will be bringing it up with the provider), but this just seems crazy how it starts and stops with no other influence.

   

Zoomed in more, I'm breathing (and oxygen is cycling) in these cute little 20-second patterns.

   

[Ratchick]

That's a central pattern of breathing I would guess. That's what I do too. It's caused by you take a deeper than normal breath, which then removes a bit extra CO2, so your prompt to breath is less strong, each time until your CO2 gets high enough to either make your breathing start ramping up gradually again (which is what periodic breathing looks like) or maybe you're having minor arousal even if you don't visibly move, just enough to take in a big breath again after the minor pause... and then it starts all over again.

I'm not an expert but I would suggest that's going to bolster the OHS diagnosis because that is a centrally-mediated issue AFAIK.

[phlamingo]

Well, I decided to boost my min pressure up to 16 last night. Looks like it helped keep my oxygen higher. Unfortunately, I woke up this morning, took off the mask, then accidentally fell back asleep with the oximeter still running, so I don't have an accurate average. Is there a way to trim off the end of my oximeter data? (It does a nice job of showing how important my CPAP is, though!)



           

[Geer1]

Yeah that one example shows a bit of central apnea like effects. Looks like you had an arousal at 1:54:45 and then some sleep transition central apnea related periodic breathing that took a few minutes to stabilize. This could be an effect of still getting used to the CPAP machine but the main problem was that the small shallow breaths afterwards were only capable of maintaining oxygen levels and not returning it to normal.

My opinion is that without the OHS you might have still seen this but it would have just been fluctuations around normal SPO2 level instead of causing it to drop and stay lower. A bilevel or supplementary oxygen would have probably kept oxygen levels higher although potentially the bilevel might have aggravated things if this was central in effect. I haven't noticed central breathing like this in your data in the past so going to assume it was just a one off for some reason.

Falling back asleep without the mask did a great job of indicating that both your oxygen levels and heart rate are benefiting from the CPAP assistance (SPO2 dropped to low 80s near instantly and heart rate was increasing to make up for it). This is why I think you just need a bit more assistance from bilevel or supplementary oxygen as I believe your current PAP treatment is close but just doesn't provide quite enough ventilatory assistance.